The cost of peace of mind: A case of unneeded bilateral mastectomy

I don’t have much in the way of eyebrows. They were victims of too much plucking back in the 1960’s and when you do that, sometimes they don’t grow back. There’s a very nice woman in Solana Beach who shapes and darkens what I have left, infrequently, when I bother to think about it which isn’t very often.

I was in there about a year ago when she told me, “I won’t be at work for the next six weeks or so — I’m having some surgery.”

Never shy when it comes to these issues, I asked, “What kind of surgery?”

She said, “Because I was diagnosed with ductal carcinoma in situ on the left, and I just want them both off.”

Ductal carcinoma in situ is what we call stage zero breast cancer — non life-threatening, but it does need to be treated because in some cases it can progress to invasive breast cancer. Treatment options range from excision only, to excision plus radiation, to simple mastectomy for more extensive cases. In no case, unless the patient carries the breast cancer gene, BRCA 1 or 2, as Angelina Jolie did, is bilateral mastectomy the recommended treatment.

Again, I said to this nice 40-year-old woman with no family history of breast cancer, “Did you at least see a radiation oncologist for an opinion? This is what I do for a living, you know.”

She said, “No, I did not. My surgeon drew me pictures of the procedures, and he said I’d be back at work within a few weeks. This is what I want. I have a 6-year-old son. I do not want to die of breast cancer.”

Her mind was made up. In situations like this, I may offer an unsolicited opinion, but here my opinion was clearly not wanted. This was the right choice for her. It’s what she needed for “peace of mind,” and I was not going to stand in her way. She had her bilateral mastectomies, and her reconstructions, and true to her surgeon’s word, she was back at work within six weeks. She was very pleased with, and relieved by her outcome.

There are a couple of problems with this scenario. First of all, my breast cancer treating colleagues and I have noted a somewhat alarming rise in the rate of double mastectomies for unilateral breast cancer in non-BRCA positive patients. The rationale for this is typically, “I want to do everything I can to reduce the chance of the breast cancer coming back,” but sometimes it’s “I want a matched set!”

What patients are often failing to realize, and are being failed by their physicians in terms of their education, is that the biggest risk they have of actually dying is from the breast cancer they already have, not the breast cancer they might be diagnosed with in the future. Once a woman has been diagnosed and treated for breast cancer, the risk of developing a contralateral breast cancer is about 1% per year, and the vigilance is stepped up accordingly — mammograms are no longer designated as “screening” but rather as “diagnostic,” and MRI’s are more frequently covered by insurance, not to mention the frequent blood work and body scans obtained in more advanced cases.

Second, prophylactic mastectomy and breast reconstruction is neither risk free nor does it often result in a “perfect breast.” Infections can occur, implants can be extruded, flaps can fail, and even if none of these things happen, the resulting reconstructed breast is insensate — in other words, it doesn’t feel like a breast to the woman who is wearing it. Even in a skin sparing, nipple sparing mastectomy, the nerve endings are cut. If an abdominal flap is used, the abdominal musculature is compromised — important for women who are athletic and need these muscles. The same goes for a latissimus flap. Not to mention the fact that many woman who are diagnosed with breast cancer are still of childbearing age and many still plan to have children. One can breast feed an infant with one breast, but not with bilateral mastectomies and reconstructions.

So if you have been diagnosed with breast cancer, please think long and hard about your treatment options and about what the goal is, which is to obtain local control of the cancer typically by either removing the breast, or by having lumpectomy and radiation therapy. The “peace of mind” obtained by removing the opposite healthy breast in a BRCA negative patient is not only just a pleasant mythology, but is also potentially dangerous, putting a patient at risk for complications when she needs to be healing and considering the adjuvant therapy, whether that be hormonal therapy or chemotherapy or radiation to the chest wall or affected breast, which will truly reduce her risk of recurrence and extend her life.

And we physicians need to remember that principle of “primum non nocere” — first, do no harm. We don’t remove other paired organs just because one is diseased, and we shouldn’t be doing it with breasts either.

The cost of peace of mind: A case of unneeded bilateral mastectomy 17 comments

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Suzi Q 38

Thank you Dr Fielding.
We rely on our doctors to tell us what is best for us.
Sometimes our fear of cancer takes over.
It is up to the surgeon to be honest and convey to the patient that “just taking everything out” provides piece of mind, has risks, and probably is not needed at this time.

I have learned not to ask the surgeon if I need the surgery, as it is difficult to find a conservative surgeon. Most surgeons want to cut.

Chiked

Actually no surgeon should be providing peace of mind to anyone. The truth is that the tumor or mass we can see visually is only a symptom of a problem occurring at the microscopic level. Taking out the mass does not resolve that problem. It will recur if you do not deal with it.

Miranda Fielding

Actually, I would not. I have a family history of breast cancer and have spent a 32 year career treating breast cancer, and once again, I will say that the cancer to be worried about is the one you already have, not the one you might get. More and more we know that it is the BIOLOGY of the cancer which causes it to metastasize and recur, not what is done to the breast, especially the breast which is not diseased to start out with.

FEDUP MD

Why is there an assumption that when one is in bad situation, that it is automatic that one will allow emotion to overrule rationality and reason? I used to hear, “Oh, you’ll think differently about XYZ when you have kids.” Well, now I do. And I still have the same opinions. They were based on what I thought was in the best interests of my child patients, and when parents ask me if I would do the same for my child in the same situation, of course. In some cases I have.

Miranda Fielding

Barbara, thank you for telling your story. Breast cancer diagnosed at age 33 is one of the most frightening things a young mother can go through. At the time you were diagnosed, we did not have a way of testing for the BRCA genes, which might have swayed you one way or the other–despite your lack of family history you may have had a mutation. As I said in my story, I do not try to second guess any woman’s decision about her own management, but I do like to know that women are making decisions based on true facts and not on suppositions and superstitions. It sounds like you made the perfect decision for yourself and I am very glad it worked out for you. In my blog, I discuss a patient diagnosed at the same age as you, 22 years ago, who convinced me to take up horseback riding (“If Wishes Were Horses”). She had a 3 year old, and she chose unilateral lumpectomy and radiation. Her daughter has now graduated from college and grad school, and my patient has never had a recurrence in the treated breast, or the unaffected side. It was the right decision for her. I hope you were able to finish nursing school and have a great career.

barbarashallcross

Should have mentioned also that I was living in Bryan,TX at the time of my diagnosis and the nearest radiation facilities were 90 miles away in Houston, Austin, or Temple. The logistics of 30 days of daily radiation, chemotherapy, a 6 year old, a 4 year old and a 14 month old child were also part of the equation, making a lumpectomy not feasible. As was the recommendation by a family friend/breast cancer surgeon that a bilateral mastectomy and oophorectomy (which I did not have) were my best options for survival. My initial insurance company refused coverage for all but the single mastectomy. Reconstruction was considered “cosmetic” in 1989. We switched to a different HMO the following year. Yes, thanks, I have been an RN now for 17+ years!

penguin50

I’m always puzzled when women opt for prophylactic mastectomies (in the absence of high-risk mutations) “because I want to do everything possible to not die of cancer!” Well, they are far more likely to die of lung cancer than of breast cancer. So, why not prophylactically resect a few lobes of their lungs? Why not have a prophylactic hemicolectomy too? Might as well also remove the uterus, the ovaries, a kidney, etc. since all of these organs are potentially subject to cancer. In theory, there is all manner of human tissue that could be removed to “prevent” future cancers. Why do these women fixate on removing only their breasts if they are consumed by a fear of getting cancer? It doesn’t make sense to me. It is as though the unrelenting media/cultural focus on breast cancer has made women irrationally view their breasts as potential enemies completely out of proportion to their actual risk of getting breast cancer, even as they somewhat naively perceive no threat from the rest of their body. Many people desperately wish to feel safe, but there is no surgery that renders a person forever safe from cancer.

Miranda Fielding

Thank you for bringing up one point I failed to make, which is that there are MANY things that each of us can do to mitigate our risk of cancer. For breast cancer, maintaining one’s ideal body weight, regular exercise starting as a teenager, reduction of alcohol consumption, and avoidance of exogenous hormones after menopause have been proven to reduce the risk of breast cancer, just as avoidance of cigarettes dramatically reduced the risk of lung cancer and heart disease. We all need to be aware that surgery is not the only answer to avoidance of and treatment of cancer.

basketballmama5

I am a uni- I had my left breast removed due to high grade dcis that was widespread. But, initially it was not obvious how widespread. My story is that the diagnostics don’t always show everything. I went to one breast center where they found some suspicious stuff on the diagnostic mammo. They were going to do biopsy/lumpectomy but failed because it was so close to chest wall.
I went to next breast center, where they did new imaging and found more areas that needed to be removed. Had I gone with the first center, I may have never known about these areas for that first surgery. and would have gone in a year later and maybe had to have surgery again.
So at this new center, I had lumpectomy. Surgeon didn’t get clean margins so needed another lumpectomy and it would be followed by radiation with no guarantee it would be the last surgery. So I said just take it off! What surgeons sometimes don’t take into account is that there are side effects of anesthesia and just surgery in general. And I could have had three surgeries in a short period of time. I wanted the surgeries done, limit it to two! (I had asked surgeon right away to do mastectomy but he talked me into trying lumpectomy) I had issues with my eyes after surgery, phlebitis in my lower leg due to the cuffs that are supposed to prevent clotting that took a year to improve. (need to be better designed so they don’t force blood back into the ankle area, maybe a boot design so the blood only gets pumped back toward heart) There is time lost with going back and forth dilly dallying with surgeries etc. By doing the mastectomy, which I had asked for before trying the lumpectomy, I would have been one and done….. I am not brca positive, but I have women in my family on my dad’s side who were in their 70’s 80’s who had to have radical mastectomies. My guess is that their cancers were slow growing and did not kill them and that maybe mine would have been like theirs. Just a guess, I prefer removing mine now than going through it at that late age. I didn’t have reconstruction, I was 43 at the time and didn’t want even more time wasted and more surgeries and I am athlete, so taking muscle from any other area was out of the question for me.

Miranda Fielding

Thank you for sharing your story. You bring up some very important points, the first of which is that imaging studies are not infallible, and I too have had patients in whom the lumpectomy for DCIS contained all of the microcalcifications (which led to the biopsy in the first place) however the margins were widely positive. Until we get to molecular imaging, this will always be a risk. I try to have a frank discussion AGAIN with a woman who has had a positive margin about the risks and benefits of proceeding to mastectomy versus re-excising the biopsy cavity. At that point, it becomes a very individual decision–some woman will immediately opt for mastectomy, and some remain very motivated to keep their breast. I try to remain neutral and to get a sense of where the patient is coming from. Second, you bring up the point that women can live happily ever after WITHOUT a reconstruction. As the daughter of a plastic surgeon, I am never against reconstruction, but I do like for women to know that oftentimes it’s not as simple as it seems.

Miranda Fielding

And congratulations on being a long term breast cancer survivor. You have a unique perspective on the management of breast cancer since you’ve watched breast cancer treatment evolve over a 27 year period, and you’ve had your own experience to draw from. I hope that you are somehow involved in supporting others who are going through the process.

Unfortunately, the Angelina media spots covering her “announcement” did not offer a lot of actual BRCA and/or genetics education. Most of the news stories and articles did put the idea of breast cancer risk in the forefront of women’s minds as well as the idea of prophylactic mastectomy/mastectomy.

That is awareness…and that awareness brought with it the ability for women to more easily have breast cancer conversations with their doctors.

The issue that I see (and I go into more detail in my blog) is that doctors aren’t referring patients to genetic counseling to correctly assess risk…so that they themselves (as well as their patients) may truly understand the breast cancer risk involved–which is a huge part in the decision making process of any mastectomy.

Did this 40 year old woman actually receive genetic counseling? Was she actually BRCA negative or just no family history? I know you said she had no family history of cancer but who was it that was deciphering her family medical history, asking questions, and deciphering her cancer risk? The counseling is a huge piece of the puzzle as the genetic counselor is an expert who knows how to correctly probe and analyze cancer risk. Primary care doctors are not trained nor do they have the time to accurately assess a patient’s genetically linked risk for cancer. It is not their area of expertise.

You say the patient was 40 years old (younger) …was she of Ashkenazi Jewish descent? Had the 40 year old woman had any previous biopsies or other medical conditions? It is unclear in this article if those issues were addressed. I would be curious.

Without the information to these questions–puzzle pieces are missing it is unclear. It may have very well been in the best interest of the patient to go the mastectomy route–it may not have been.

I completely agree with you that physicians need to remember the principle of “primum non nocere” — first, do no harm. But included in that “first do no harm” is for the doctor to make sure their patients are properly evaluated so that they can make the best possible recommendations to them; and so that the patients can make the best possible medical decisions for themselves. That includes referring to genetic counselors and encouraging 2nd opinions.

Amy, thank you so much for your detailed response. With regards to the patient I wrote about, she was not tested for BRCA, she did not receive genetic counseling, she had not had previous breast biopsies and she is not of Ashkenazi Jewish descent. Even though she was not my patient (I am her client) I did ask these questions. I absolutely concur with the value of genetic counseling, and with that more physicians would utilize this important resource, available in most major medical centers. I recently had a patient who had to make the difficult decision regarding post mastectomy radiation for bilateral locally advanced poor prognosis breast cancers at age 38–she was found to have Li-Fraumeni syndrome, a likely under diagnosed genetic predisposer to early breast cancer but also to radiation induced cancers. She sought, and I actively encouraged her, to seek second and third opinions from oncologists and genetics counselors at both MD Anderson and the Dana Farber. All of these opinions were valuable and helped her come to a decision she could live with. Again, thanks for your input.

Miranda Fielding

Stacy, please read what I wrote again. I was not talking about bilateral prophylactic mastectomy at all. I was talking about unilateral prophylactic mastectomy in an acquaintance with NO family history and no risk factors for being BRCA 1 or 2 positive, and who had a small non invasive breast cancer (and who had received NO counseling or second opinions) and the point I was trying to make is that for most women who have already been diagnosed with unilateral breast cancer, especially invasive breast cancer, they need to worry more about the breast cancer they already have than the one they might get.
You obviously made the correct decision for yourself. You did your homework, and you were VERY lucky to be referred to a genetic counselor who recognized that we do not know ALL of the mutations that cause breast cancer. You likely saved your own life. Please read Amy SHainman’s comment below, and visit her blog.
Truly, I have spent a 32 year career in radiation oncology treating breast cancer. I care what women think and want, and I appreciate your comments, especially the important point that BRCA I and 2 are not the only breast cancer causing genes, and that when in doubt, especially with a big family history, see a trained genetics counselor.

disqus_question_everything

All great points! It is even WORSE in the Gynecology specialty. Hysterectomy is GROSSLY overused (76% do not meet ACOG criteria). And more than half of women lose healthy ovaries (castration) at the time of hysterectomy despite a woman’s lifetime risk being less than 2% (absent the BRCA1 or BRCA2 gene mutation).

this article seems to be written from the bias of having reconstruction. for women opting out of reconstruction, going flat on both sides can be a much better choice than a single mastectomy – not the i-don’t-wanna-die perspective but rather the simple how to get dressed in the morning and playing sports perspective and other perspectives. can you imagine having just one double d breast, for example? for those of us who opt out of reconstruction, the double mastectomy in many ways can be the better choice. i have symmetry. i can choose to wear two perfectly matched prosthetics or choose to go flat. i can simply run across the room without worrying whether my one breast will fly out my bra. in fact, i never wear bras. ever. and more.

I chose to have a bilateral mastectomy. i had very dense breasts, and they were somewhat large. their density was one risk factor. another issue was fibrocystic tissue, which meant i had lots of lumps and bumps. chasing after every single lump and bump – nonstop – was not going to contribute to a sense of well being. in the interest of feeling calm about my body, choosing the bilateral mastectomy was a wise choice. finally, i’m an athlete at a very healthy weight. i can just get up and jump across the room, jog to a meeting across campus, or dance enthusiastically with my child. honestly? i LOVE being flat. do i miss my breasts? sometimes… but i do not – not for one second – regret my decision to have the bilateral mastectomy.

Miranda Fielding

You bring up a very valid point–for a large breasted woman to have a unilateral mastectomy, there can be health consequences such as back and shoulder pain and even, over a long time, spinal asymmetry. It’s one of the reasons that Medicare covers reconstruction. But even reconstruction of the breast which has been removed is not simple in a large breasted woman–often the opposite breast needs to be reduced and/or lifted. Thanks for writing in.